Youth participatory research and evaluation to inform a Chagas disease prevention program in Ecuador

Accepted Manuscript Title: Youth Participatory Research and Evaluation to Inform a Chagas Disease Prevention Program in Ecuador Authors: Bel´en Marco-Crespo, Sharon Casapulla, Claudia Nieto-Sanchez, J. Guillermo G´omez Urrego, Mario J. Grijalva PII: DOI: Reference:

S0149-7189(17)30108-8 https://doi.org/10.1016/j.evalprogplan.2018.04.009 EPP 1566

To appear in: Received date: Revised date: Accepted date:

23-3-2017 15-3-2018 29-4-2018

Please cite this article as: Marco-Crespo, Bel´en., Nieto-Sanchez, Claudia., Urrego, J Guillermo G´omez., J., Youth Participatory Research and Evaluation to Disease Prevention Program in Ecuador.Evaluation and https://doi.org/10.1016/j.evalprogplan.2018.04.009

Casapulla, Sharon., & Grijalva, Mario Inform a Chagas Program Planning

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Running head: YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO INFORM CHAGAS DISEASE

Youth Participatory Research and Evaluation to Inform a Chagas Disease Prevention Program in Ecuador Belén Marco-Crespo1,2, Sharon Casapulla1, 3, 4,, Claudia Nieto-Sanchez1, J. Guillermo Gómez Urrego1, Mario J. Grijalva1, 5

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1. Infectious and Tropical Disease Institute, Department of Biomedical Sciences, Ohio University Heritage College of Osteopathic Medicine, 333 Irvine Hall, Athens, OH, United States 2. Communications and Development Program, Center for International Studies, Ohio University, Athens OH 45701 3. Department of Family Medicine, Ohio University Heritage College of Osteopathic Medicine, Athens, OH, United States 4. Office of Rural and Underserved Programs, Ohio University Heritage College of Osteopathic Medicine, Athens, OH, United States 5. Center for Health Research in Latin America, School of Biological Sciences, Pontifical Catholic University of Ecuador, Quito, Ecuador.

Sharon Casapulla Email: [email protected] Phone: 740-593-2257

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Date of submission: March 23, 2017

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Highlights

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By demystifying research practices youths can develop their reflexive and critical skills. Youth can explain cultural perceptions that can be key when developing health interventions. Developing effective youth leadership skills takes time and a longitudinal commitment. Youths as “lighthouses” that can peer train other youths and members of their communities

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Corresponding author:

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abstract, tables or references

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Belén Marco Crespo [email protected], Sharon Casapulla [email protected] Claudia Nieto-Sanchez, [email protected] J. Guillermo Gómez Urrego, [email protected],

YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO PROMOTE LEADERSHIP AND KNOWLEDGE SHARING

Mario J. Grijalva [email protected].

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Title: YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO INFORM A CHAGAS DISEASE PREVENTION PROGRAM IN ECUADOR Abstract This qualitative study engaged a group of young people in participatory research and

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evaluation activities in order to study to what extent engaging youth in health interventions can inform research and evaluation processes. We applied a youth participatory research and evaluation approach (PRE) to inform research and evaluation on the impact of a Chagas disease

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control program in southern Ecuador. Our main interest was to examine the methodological

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contributions of PRE to knowledge sharing for health intervention planning in the context of

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global health and neglected tropical diseases. The results of this study suggest that by

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demystifying research and evaluation practices and rendering them accessible and relevant, marginalized youth can develop critical and reflexive thinking skills that could be useful for

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decision-making on health promotion. Our findings also reveal the potential of youth as active

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participants in project development in ways that enhance, validate, and improve health

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interventions. Young people are interested in learning about and sharing local knowledge that can benefit research and evaluation processes. Despite the numerous strengths demonstrated by

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PRE, the inherent complexities of international development, such as cultural differences, asymmetrical power relations, and the ongoing challenges of sustainability, remain.

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Keywords: Participatory Research and Evaluation; Youth; Youth-led Research; Engaging Youth; Leadership; Communication for Social Change; Participatory Methods; Ecuador

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YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO PROMOTE LEADERSHIP AND KNOWLEDGE SHARING

Introduction Multiple authors in the global health community have highlighted the importance of incorporating local communities when designing health interventions in order to facilitate ownership and sustainability (WHO, 1978). Integrating the voices of community members has been seen as a way to ensure that the values and interpretations of external researchers do not

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occlude local perspectives (Greiner, 2012). In this context, participatory approaches emerge to “shift the imbalance in power [fostered by top-down approaches] by expanding the role of

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community members” (Greiner, 2012, p.349). These approaches have helped organizations to both understand qualitative results and to promote a shift in power relations among donors,

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organizations, project participants and other stakeholders (Lemaire & Lunch, 2012).

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Participatory methodologies include a range of techniques that attempt to involve

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stakeholders in all stages of local economic and human development (Durá, Felt, & Singhal,

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2014). In particular, some authors have illustrated how participatory methods (PMs) can help to articulate ideas, stimulate the circulation of unpublished knowledge, enhance understandings and

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“invoke grassroots wisdoms to surface” (Durá, et al., 2014, p.100). Additionally, PMs have

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proved to be effective methods to “generate knowledge of realities, often otherwise inaccessible for outsiders” (Chambers, 2010, p.37).

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In spite of growing efforts on the part of international organizations to develop and

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implement participatory approaches in development processes, community participation is still hard to define and achieve. In particular, aspects of research and evaluation have traditionally

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focused on adults’ perspectives. Government agencies, international organizations, and NGOs have historically enrolled local adults as their almost exclusive partners and primary interlocutors, even when applying participatory approaches. Increasingly, a broad range of participatory strategies has included youth perspectives in community development, health care and community health promotion (Amsden & VanWynsberghe, 2005; Brumby, Eversole, &

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Watt, 2007). Youth, however, are typically approached as passive subjects (often targeted as subjects of study) instead of active agents in development processes (Powers & Tiffany, 2006). Youth participation has been defined as a type of involvement in which young members of a community can decide and exercise active influence on issues that affect their lives (Checkoway & Richards-Schuster, 2003; Nlerum & Okorie, 2012). Some authors have

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emphasized how youth participation can enhance youth developmental skills, as well as improve project design within organizations (Fox & Cater, 2011; Krenichyn, Schaefer-McDaniel, Clark,

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& Zeller-Berkman, 2007; Powers & Tiffany, 2006). Lessons learned from a participatory youth evaluation conducted in Brazil stated that engaging youth in evaluation processes and including

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them in decision-making opened up a space for dialogue among all involved stakeholders— a

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space otherwise rarely achieved. In this case the project served as a unique learning experience

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structures (Brandão, Silva, & Codas, 2012).

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(sharing of memories, information, feelings) that attempted to break hierarchical and institutional

In this study, we applied a youth participatory research and evaluation (PRE) approach

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(Checkoway & Richards-Schuster, 2003; Powers & Tiffany, 2006) to involve rural and urban

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youth from Loja Province, Ecuador, in research and evaluation of a Chagas disease prevention program developed in this area. As an emerging subfield of practice and inquiry, this approach

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has been extensively studied in interventions involving youth at risk (Coser, Tozer, Van Borek,

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Tzemis, Taylor, Saewyc, & Buxton, 2014; Sabo, 2003), in contexts of community action (Ashton, Arton, and Wells, 2010; Le, Arifuku, Vuong, Tran, Lustig, & Zimring, 2011) and for

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different health issues (Ribisi et al., 2004; Rink, 2016;). These areas of inquiry provide important references to explore the possibilities and limitations of PRE when involving rural youth, a particularly underrepresented group in development practices (World Conference of Youth, 2014). This is especially the case in participatory projects, where community members generally,

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YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO PROMOTE LEADERSHIP AND KNOWLEDGE SHARING

and youth in particular, are rarely asked to take part of the programs with their research and analytical capacity (Foster-Fishman, Law, Lichty, & Aoun, 2010).

Previous research has shown that PRE can help youth to develop their critical and reflexive thinking skills, become more aware of the reality in their communities, enable them to

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reflect on their own concerns, motivate them to take action in the community, increase their community involvement and enhance their ability to promote community change (Checkoway &

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Richards-Schuster, 2003; Krenichyn et al., 2007). This approach relies on local knowledge

(Powers & Tiffany, 2006) as a way to identify and affirm youth involvement and leadership in the process of discovering, analyzing, and interpreting the changes that unfold in their own social

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milieu. It also emphasizes the epistemological dimension of evaluative processes, conceiving

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them as privileged opportunities for knowledge production, learning and consciousness-raising.

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Similarly, it has been established that engaging youth in problem identification, data analysis and

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feedback nurtures their capacity to develop reflective and inductive skills. The full involvement of youth in data analysis is, according to some authors, absolutely necessary to develop their

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critical skills (Foster-Fishman, Law, Lichty, & Aoun, 2010).Our research question was whether,

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and if so, to what extent youth-led participatory research methods can inform research and

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evaluation in health interventions. We will present findings from a qualitative analysis of participants’ experiences as part of this process, as well as lessons learned about how to engage

Methods

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youth in health interventions.

The Healthy Living Initiative The Healthy Living Initiative (HLI) is a multidisciplinary research-based Chagas disease (CD) prevention program led by the Center for Research on Health in Latin America (CISeAL) at Pontifical Catholic University of Ecuador and Ohio University’s Infectious and Tropical

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Disease Institute (ITDI). It aims to construct a long-term CD prevention model in three communities in southern Ecuador. Chagas disease is a neglected tropical disease that affects an estimated 200,000 people in Ecuador and almost six to seven million people worldwide (Dumonteil et al, 2016; WHO, 2015; WHO, 2016). It is considered a neglected disease because it disproportionately affects people in underserved and marginalized communities with limited or

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no access to health services, particularly in the Americas (WHO, 2016). This disease is caused

by a parasite, Trypanosoma cruzi, and can be transmitted by blood transfusions, from mothers to

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fetus during pregnancy or through direct contact with the feces of T. cruzi infected triatomine insects (Coura, 2013), known in Ecuador as chinchorro (from Spanish).

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Given CD’s condition of neglect, HLI works to address the interrelated social, economic

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and political factors driving to its occurrence in the communities of Bellamaria (approximate

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population 148), Guara (approximate population 121), Chaquizca (approximate population 220),

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located in Calvas County, Loja Province, in the highlands of southern Ecuador. These communities are affected by precarious socioeconomic conditions characterized by limited job

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opportunities, poor access to services such as potable water and sanitation, education and health,

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and exposure to environmental conditions leading to disease (Author, 2005; Author et al., 2015). Consequently, high risk to CD transmission and infection potentially leading to increasing

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health, social and economic burdens, has been reported (Author et al. 2015; Black et al 2007).

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As part of its overarching goals of promoting community organization and capacity strengthening, HLI has supported a series of activities in Chaquizca’s elementary school since

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2009. Such activities have ranged from community theater and sports for development, to the construction of a fence, a community garden and a playground built in partnership with local families. The projects have involved local students, teachers and members of the parents’ association under the premise that CD preventions can be a community endeavor. Research Design

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The purpose of study was to understand whether, and if so, to what extent, youth-led participatory research methods can inform research and evaluation of the impact of HLI in this particular community. Our main interest was to examine the methodological contributions of this research approach to knowledge-sharing for health interventions’ planning in the context of global health and neglected tropical diseases.

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Study area and participants

This research took place in June 2015 in Cariamanga (population, approximately 13,311

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inhabitants), an urban center located in Calvas County in Loja Province (Ecuador). Because Cariamanga is the only urban center in the mostly rural Calvas County, a large part of the

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population is involved in agricultural production. Cariamanga is the only location offering high

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school education in the county, thereby, attracting a transient adolescent population from nearby

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rural villages such as Bellamaria, Guara, and Chaquizca. Rural communities located in these

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areas face multiple challenges because of their low demographic density and the lack of access to transportation, education and health services. The schools lack adequate educational resources,

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infrastructure and opportunities possibly causing youth to migrate to bigger cities to study.

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Furthermore, these communities are remote, with precarious and unreliable access to transportation services to the urban center.

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Selection criteria

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A group of adolescents from the communities called the Ñaños—a Quechua word that can be translated as brothers and sisters—was formed by HLI in the summer of 2014 with the

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purpose of engaging youth in participatory video projects that could help them to document aspects of local development as understood from their own perspective. In 2015, we contacted this group and invited them to take part in a participatory research and evaluation intervention that could help them to implement skills obtained during the first phase of the project, while analyzing HLI’s role in their communities.

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The Ñaños group was composed of thirteen adolescents between the ages of 12 and 18 (ten female and three male). From this group, five participants had previously participated in the 2014 project. Potential new participants were identified following a snowball sample strategy (Creswell, 2008). Group members came from the rural villages of Bellamaria, Guara and Chaquizca, as well as from the city of Cariamanga. Despite being less than an hour away, the

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lifestyle in the rural communities is substantively different from the city, marking visible

differences between rural and urban youth. At the time of this research, five of the youth were

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from Bellamaria but were living in the city to attend school; six of them were from Guara and

Chaquizhca and were traveling daily to the city to attend school; and two of them were originally

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from Cariamanga city. Despite living in the city, most members were born and raised in rural

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communities surrounding the urban center.

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This project was conducted over the course of five weeks, from May 25, 2015 until June

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25, 2015. Participants took part in a participatory research and evaluation intervention structured as a three-part strategy: 1) training in research, evaluation and participatory video; 2) collective

Ethics

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research and evaluation; and 3) participatory data analysis and dissemination (Table 1).

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Ohio University’s Institutional Review Board approved this study. All participants and

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their parents were individually and/or collectively introduced to the research goals, and invited to be part of the process. We obtained informed consent from parents and teachers and assent from

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minors 12 years and older (according to Ecuadorian law). We designed these documents in Spanish to guarantee participants’ full understanding of the research goals and objectives. At the moment of obtaining informed consent, we informed participants and their parents about our research purposes and methods, as well as what would happen to the information obtained and how would we manage confidentiality in this process.

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Data Collection The research team collected four types of data in this study: semi-structured face-to-face interviews; visual materials including sketches, pictures and videos; Facebook posts published by research participants; and field notes produced during intensive participant observation conducted by the first author along the process. Each member of The Ñaños group was

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interviewed twice, once at the beginning and once at the end of the intervention. Interviews

lasted for 45-minutes on average. Issues such as health, perceptions of youth leadership, their

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role and life in their communities, as well as perceptions and understanding of research, were

covered in the interviews, as well as sketches, pictures and videos produced in individual and group exercises in all components of the project. Additionally, The Ñaños group had a Facebook

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page —created by the 2014 group— where they could post photos, and comments around the

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project. These posts were also collected and analyzed as part of this research.

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Data Analysis

Analysis of interviews and the field notes

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We transcribed the interviews and drafted a summary sheet of the field notes (Miles &

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Huberman, 1994). All data were analyzed in Spanish. For the purposes of this article we translated the included quotes. We elaborated an a priori coding list derived from the research

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questions determined before going to the field (Miles, Huberman & Saldana, 2013). During the

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first cycle of coding we developed a theoretical definition of the codes that we would assign during the analysis to the data groups and that would guide the coding process. To respond the

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research questions, we focused on three a priori codes: capacity building in research and evaluation, community produced knowledge and youth leadership. This first cycle, however, remained open to emergent coding that would result from the analysis. We applied three a priori codes to the data and thirty-three new codes emerged.

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After coding the information, we clustered codes into categories and subcategories in order to classify the data and find commonalities (Creswell, 2003). This process took several revisions and multiple coding cycles, as we jotted down disruptions, contradictions, salient and peculiar elements, and metaphors (Creswell, 2003). Codes were grouped into the following six categories: youth, research, youth participatory evaluation process, community, health, and

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differences of living in the city and in the community. Once we had all data coded and

categorized, we looked for themes finding the relationship among the codes and categories

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(Graneheim & B. Lundman, 2003). We analyzed and assessed the central research questions

procedures for thematic analysis (Glesne, 2006). We then compared the interviews, field notes

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and video transcripts and video extracts to look for both similarities and differences among data.

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Analysis of visual materials and the Facebook posts

As Glesne states (2006) "the use of multiple data collection methods contributes to the

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trustworthiness of the data” (p.36). In this regard, all the footage and Facebook posts added complexity to the analysis. Although we did not transcribe all the footage, we used the footage as

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an additional source to give meaning and validity to the analysis. We analyzed the transcripts of

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the videos applying the aforementioned coding system and using thematic analysis. We wrote analytic memos of the researcher’s impressions based on what the participants said, thought and

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felt (Creswell, 2003). We analyzed the sketches extracting the information that was written,

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applying the coding system and using thematic analysis. We analyzed the Facebook posts of the participants as text following the same coding system. We went back and forth between the

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transcripts, the field notes, the Facebook posts, the memos and the video extracts to contrast information, and identify trends that could help us to triangulate the findings.

Results

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In reviewing the data for themes, five themes emerged: no one hears our voices, youth leaders support communities and transfer knowledge; research can lead to positive social change; a researcher is humble, responsible and generous; and youth participatory research and evaluation as an approach that provides grassroots knowledge and promotes knowledgesharing. Apart from these emerging themes, as a cross cutting theme, we were interested to

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explore how this youth relate to Chagas disease prevention efforts. We called this theme what

youth know about Chagas disease. In subsequent phases of analysis, we grouped our themes into

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three broader categories: 1) exploring youth leadership, 2) changing perceptions of research, and 3) analyzing the potentialities of youth participatory research and evaluation approach.

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Exploring Youth Leadership

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We identified two main themes related to youth leadership: no one hears our voices, and

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youth leaders support communities and transfer knowledge. The first theme explores one of the

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most mentioned youth concerns, while the second theme gathers youth's perspectives and roles on leadership. The no one hears our voices theme describes how the Naños feel about their

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voices in the community. The quotes below indicate they feel that their voices are not heard, that

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their opinions are not taken seriously by adults, and that they sometimes feel that adults render them invisible. They mentioned that their parents consider them too young to be knowledgeable

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about life and to participate in familial decisions. They felt that more activities should be offered

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to them. They mentioned lack of access to transportation as one of the impediments to participating in such spaces. We witnessed that they are often assigned adult responsibilities such

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as taking care of younger siblings, cooking for the family and working in family gardens. The following quotes illustrate this point: [At the end of the process] Adults, they don’t know what we do or how we think. I have many things that I would like to express, I would like people to listen how a teenager feels in this place, what it is to be a teenager. Sometimes I wish we had more support but there are not many people to talk to. I would like to have more emotional support. (Female, 16, Bellamaria) 11

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Youth in this area lack motivation. They need to start believing in themselves, to believe that they can do things by themselves. Young people shouldn’t be made feel vulnerable. We must feel that as youth we are capable of providing ideas and that our opinions are being considered. (Female, 15, Cariamanga city)

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Young people have the right to give their opinion and to choose the way of doing things. Parents say "I am the father so I have control over you". In part I understand that statement because they are our parents but we also have the right to say that we don't agree with something. We deserve our opinions to be respected and heard. (Female, 15, Cariamanga city) As youth we have so many things to say and to work for." (Female, 15, Cariamanga city)

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The youth leaders support communities and knowledge-transfer themes capture how the Ñaños perceive their role within their communities, and their perceptions and concerns in

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reference to leadership. High self-esteem and confidence are essential qualities to becoming a

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leader. The group related leadership with public speaking and persuasion skills. They expressed

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that public speaking is a sign of self-confidence, and acknowledged the importance of having

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high self-esteem in order to speak in public. At the beginning of the process they expressed insecurities towards talking in front of other people. Specifically, rural males mentioned that

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being deemed as illiterate, or the possibility of being bullied were some of their most common

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fears when speaking in public.

[At the beginning of the process]

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[Regarding public speaking] "I feel embarrassed because everybody is watching me. I am afraid of failing, I am afraid that people can say that I don't know how to read or that I don't know how to speak in public. (Female, 18 year old, Bellamaria) [Regarding public speaking] “One good thing about public speaking is that people can understand your needs, and therefore you can receive support. However, people are accustomed to make fun of you if you don't express yourself correctly, or for instance if you are not well dressed. (Male, 15, Chaquizhca)

[At the end of the process] The process helped me to become more confident, to stop being so nervous. I feel more confident. I feel better with my self-esteem. The process helped me to believe in myself more, to feel capable of achieving things.” (Female, 15, Cariamanga city)

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The project has helped me to open my feelings, to broaden my thoughts, to get to know young people that I did not know before. (Female, 13, Bellamaria) The Ñaños see themselves as valuable assets to the communities. The quotes below indicate that the group would like to perform an active role within society and specifically in their communities. They see youth as holding an important position within the community; they

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are willing to collaborate and invest their time in community affairs. Furthermore, they highlighted the need to help elders, to contribute to household chores and repairs, to help

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organize community events, and to motivate other youth to participate in community affairs. [At the beginning of the process]

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The purpose of a community and a neighborhood is to collaborate. My role as youth is to help my family, to respect my parents and to help my younger siblings. To do my homework. In the community, one thing that is broken I have to help fix it. (Male, 15, Chaquizhca)

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[At the end of the process]

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There is something I can do to support my community. To help people discover which are their needs and try to find ways to help them. Basically to make sure their needs are heard, to find help, see if there is somebody willing to help them. (Female, 15, Bellamaria)

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As youth I would like to help others who lack support. To help other young people. Also the elderly who have no help from anyone. To support all of them. (Male, 12, Guara)

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According to the group, one of the purposes of being a leader is to be able to train other young

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people and to transfer knowledge. The quotations below indicate how strongly the Ñaños desired to do this in their communities.

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[At the end of the process] "Down [in the communities] I would like to teach my parents what I learned along this project, to help them because they don't know anything of what we learned here. That way they can learn from us. I would also like to teach other young people, so they understand for example how to protect themselves from the kissing bug, I'd like to explain [to] them how to avoid the [Chagas] disease. Therefore, they could do what we indicate them and take measures. If we don't tell them about Chagas disease they might know nothing about how to prevent the kissing bug disease. (Female, 16, Bellamaria) “I would teach people so many things. What research is about, how to use a camera, how to take pictures, how to frame a picture, how to film somebody without camera shakes, and how to record audio. Personally, I have learned so much, before this project I did not know 13

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how to do an interview or what research was. Now I know. I would feel comfortable doing any of these things now. (Female, 16, Bellamaria) “I would like to use what I learned from this group and peer train other young people. To, let's say, do something in my community, to do what I learned here such as interviews. (Female, 16, Bellamaria) Changing Perceptions of Research and Evaluation

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We identified two main themes related to changing perceptions of research and evaluation: research can lead to positive social change, and a researcher is humble, responsible

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and generous. The first theme highlights the purposes of research according to the youths

perspectives and explores their thoughts and emotions in regard to research. It is worth noting that the group had a basic understanding of research before the project started; they kept

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expanding the idea of research based on their initial thoughts. In the initial interviews, we asked

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them what they think are the goals of research. They made references to finding meaning and

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exploring topics in a deeper way. According to some of them, research starts a longitudinal

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process that goes from a basic to a more complex idea. Some of them expressed their interest in keep doing research and evaluation. Some were more inclined to do interviews and work in

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research design, while others preferred to focus on video recording. At the end of the process

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some of them highlighted the potential of research as a tool to change realities or improve

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community and urban life. They also started to verbalize ideas, recognizing local needs and proposing their own research interests.

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[At the end of the process]

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Thanks to learning about [research and evaluation] I have realized that we can change people's opinions. (Female, 16, Bellamaria) With research we can find ways to try to improve things in the future. Let's say that through research you can understand what people need, and which are the things that you need to do in order to help people to obtain what they want. Going deeper into the things we want to know can help to change/improve things." (Female, 16, Bellamaria) Research is like building a puzzle. First you have to search all possible information. Once you have the pieces you start building the puzzle to understand the whole thing." (Female, 15, Cariamanga city). 14

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I've learned that research can help to change things. It can help us to feel better, more comfortable with ourselves. It can help us to understand a situation. (Male, 15, Chaquizhca) One of the purposes of research is to seek information about what’s not working well in the country, to obtain facts of a situation so we can let the authorities know about what needs to be addressed if we are to progress in the future.” (Female, 15, Cariamanga city)

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As youth we could have conversations with locals, to see if they feel alright or if they want to change something in their community. Or if they want to improve something with what they don't feel well. (Male, 12, Guara).

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I would ask community members about land and property. I would ask them which are their plans in regard to land, if they want to sell it or leave it to their son in inheritance. (Male,15, Guara)

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That moment when, let’s say, you have done the analysis, after you process all the information, that moment is when you realize that the process has been big. But I mean you did it, the moment you realized you did it, and it looks good, you start feeling well, because you belong to the whole thing. Then you see that the process has been easy, because you participated and you were able to do it. (Female, 16, Bellamaria)

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The second theme, researcher is humble, responsible and generous, indicates the

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participants conceptual understanding idea of a researcher, including how she or he should act. In one of our first activities, we asked the group to describe the physical appearance of a researcher

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and the personal qualities of a researcher. We wanted to understand their initial perceptions of

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the concept, and subsequently demystify the figure of the researcher. At the beginning of the

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process the definition of a researcher was consistent: All associated a researcher with the figure of a detective, a tall person, somebody who carries personal objects such as a computer,

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telephone, loupe and a camera. All of the descriptions made reference to a male researcher. This perception changed over time as they started developing an identity as researchers and started to

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recognize themselves performing that role. They expressed that a researcher should be enthusiastic, responsible and serious about work. The group associated research with note taking, observing, talking, reading and storytelling. Along the process these ideas expanded, as they started to incorporate concepts such as humbleness, generosity, solidarity and responsibility. [At the end of the process] 15

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A researcher is somebody who is dressed normal. It is somebody solidary and responsible. You have to treat people with respect if you want to do research. You cannot treat people as if they know nothing because truly they know more than us. We are just asking them questions so we don't have to feel that we are over them or we are more than them. We should be like them. (Female, 13, Bellamaria)

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I learned that we don't have to feel nervous when doing research. Instead I think we have to be generous with people. You have to be generous with people when doing research that way people perceive that you are happy about doing what you want to. (Female, 15, Bellamaria)

Analyzing the Potentialities of the Youth Participatory Research and Evaluation

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Approach

When analyzing the potentialities of the participatory research and evaluation approach

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two themes emerged: Promoting knowledge-sharing between participants and providing

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grassroots knowledge between participants and researcher. The group described the intervention

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as a space to learn, share and produce knowledge. They considered the process inclusive, a space

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to make friends, understand other youth concerns and personalities, a close-knit space for new experiences. At the same time, they acknowledged their local wisdom in regard to farming, their

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[At the end of the process]

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culture and their folklore.

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There are things that you teach me and there are things that I teach you. Because there are things you do not know from the countryside. You are from the city. You don’t know what lampiar [cleaning land ]is. You don’t know what molienda [space for sugar cane processing] is. I would teach you how to ride a horse. (Male,12, Guara)

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What I liked the most was doing interviews: Interviewing is fun, it is fun to be in front of someone and listen to what they have to say, and you feel great because—wow—the person you’re interviewing stops and really pays attention to you and you are learning a lot from her. (Female, 16, Bellamaria) On the other hand, the process generated rich information about the regional context in

which the youth live, as well as their needs, frustrations, and concerns. [Quotes from throughout the process]

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Our garden allows us to have products grown in our communities so then we can bring them to sell it in other communities or the city, so we can eat and study (Female, 15, Bellamaria) In my dreams, I imagine myself travelling on a plane, arriving somewhere new. I imagine myself arriving to a big room which all its air conditioning machines, with all of those machines that you don’t know how they got them, with all of induction stove. If I go to another country, I will have to start from scratch. (Female, 15, Bellamaria)

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I prefer the countryside. There I know that I have what I need, whereas in the city I don’t, I need more money to survive. I don’t need much money in the countryside because I have my animals, my chicken. (Female, 16, Bellamaria)

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In my family my brothers left because they did not like parents telling them what to do, they wanted to be free to do what they pleased. (Male,15, Guara)

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I feel that there is a huge difference between living in the city or the countryside. In the countryside you have to take care of the animals, sometimes you have to wake up really early. It is not like in the city that you sleep until 8 or 10 in the morning. If you want you wake up, if you want you eat and if you don’t want, you don’t eat. However, in the countryside you have to take care of your animals to have good diet. (Female, 15, Bellamaria)

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Here we finish school and what we need is a university. We had a university before but now it is closed. Young people who want to study have to go to Quito (Capital of Ecuador) or Loja (Capital of Loja Province). Those who want to work have to leave too because there are no job opportunities. Here you do not get paid the basic salary but instead in other cities you do. That is the reason why young people are leaving.(Female, 16, Bellamaria)

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Every time that I come to my community I visit my grandparents. My mom cooks chicken, which tastes better than the one in the city. There are not cars, we have to use animals to move around. I use the horse or the donkey. You don’t listen car's noise. You live a quiet life.(Female, 15, Bellamaria) Differences between urban and rural life were established along the process. The urban

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female participants made reference to the rural youth in third person as distancing themselves from them. They pointed out the unequal access to opportunities that exist between rural and

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urban youth.

Sometimes rural youth have fewer opportunities than urban youth because people say they are inferior; that is because there are people that classify people in regard to social classes. So these projects are very good for them because it encourages them (rural youth) to be independent, to be conscious that their opinions should be heard and that they should take decisions in their processes.” (Female, 15, Cariamanga city).

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Additionally, during one of the visits to the elementary school of Chaquizca, the urban youth pointed out some differences between rural and urban settings in regard to the quality of the infrastructure.

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Here in this school they don’t have computer center. The courts are very different, in the city they are more colorful and well-painted. Our trash cans are in better shape too, they are more modern and we separate organic from inorganic. The uniforms are also better in the city.(Female, 15, Cariamanga city). Rural youth, on the contrary, pointed out differences in regard to having access to

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nutritious food, a less contaminated environment and their own animals and garden.

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Not because we belong to the city then we behave as rich little kids. Not because we belong to the rural communities we have to be treated differently. I tell people in the city that it feels so good to belong to the countryside. My peers used to say that people from the city just eat noodles and we, people from the countryside, we come here feed of oranges. (Female, 13, Bellamaria)

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The theme what youth know about Chagas disease explores youth’s understanding of

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Chagas disease. Due to their exposure to health promotion activities organized by HLI in the

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communities and their previous contact with members of the team, rural youth were more knowledgeable than urban youth about the risk factors associated with Chagas disease. They

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were able to mention some of the healthy practices associated with Chagas disease prevention at

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their homes such as not to pile up clothes, keeping animals out of the houses and peridomiciles

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(surrounding areas of the house) or periodically changing the chicken’s nests to avoid kissing bug infestations. We noticed that although they provided accurate knowledge they also harbored

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some misconceptions; for instance, that Chagas disease is untreatable. Urban youth, on the contrary, claimed that they had never heard of Chagas disease. At the end of the process the

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group was able to describe the Chagas transmission cycle, the main symptoms, and healthy prevention practices introduced by the HLI team. Discussion Consistently with previous literature, our findings suggest that youth participatory research and evaluation (PRE) can enhance skills and increase self-esteem and a sense of 18

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achievement among youth. It can stimulate knowledge sharing among rural and urban youth and between them and external researchers, and it can facilitate the circulation of grassroots knowledge with regard to the role of youth in their communities. Specifically, our study generated useful information about youths’ perceptions of their environment and lifestyle. From a program evaluation perspective, the results provided useful information about existing

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dynamics between youth and adults (i.e. the way youth see at themselves, and the way they think adults perceive them), and created space for participants to express about how these dynamics

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impact their lives. HLI was made aware of the potential risks that teenagers can be exposed to

due to the responsibilities they have to assume early on in their lives, including early pregnancy.

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The study also made evident that including youth’ concerns and priorities in the decision-making

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process regarding interventions within the home it is crucial because of the role that youth can play in improving health in the long term. The study also highlighted the existence of a

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fundamental dynamic of migration that will need to be considered by HLI’s in future planning for the project.

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Additionally, participatory research methods can generate opportunities for knowledge

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production, learning and consciousness-raising, all of them fundamental for sensitive decision making in health interventions. Acting as beacons in designing health interventions, as well as

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peer-to-peer facilitators, participants can be empowered in their interest on being leaders of

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change in their communities. The Ñaños considered youth to be an important community asset. They expressed their interest in being considered part of their communities’ development, as

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well as frustration regarding the lack of opportunities to participate in community and urban development efforts. This was particularly important to rural youth, due to their isolation and poor living conditions. Youth acknowledged the difficulties of living in rural communities in terms of access to education and job opportunities, and mentioned that they would probably

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leave the communities just as their siblings had done before them. We also noted, however, that they assert a strong connection to their traditions and community-based way of living. Youth willingness to learn and share can benefit research and evaluation processes. They hold local knowledge and have passion and energy, all qualities that are mostly neglected in development initiatives in this area. As identified in previous interventions, perspectives of

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young people can improve the quality of research and evaluation, as they tend to contribute

meaningful data that eludes adult-centered methods, as well as add valuable layers of meaning to

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the collected data (Powers & Tiffany, 2006, p.80). Furthermore, youth can provide firsthand information about their homes, schools, communities, and explain ethical and cultural

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perceptions that can be key when developing health interventions. Also, they play a significant

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role in transmitting knowledge to their communities; youth skills, knowledge and energy can

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guide the design of health promotion efforts, which can improve effectiveness and program

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outcomes of health interventions in the long run (Krenichyn et al., 2007) Public speaking skills, self-confidence and high self-esteem are important assets in

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developing individual agency and community action. These assets, which our study shows can

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be developed, can provide young people with some necessary tools to make their voices heard. As they feel more confident talking in front of adults, young people can start challenging adult

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perceptions of youth’s position within the community, and also their own perception about their

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role in community life. It is worth noting that while they appreciated the idea of leadership, when left alone—without the presence of an external researcher to encourage their involvement in

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specific activities—they found it more difficult to take up such a role. This again exemplifies the notion that developing effective youth leadership skills such as public speaking or decisionmaking takes time, mentorship and a longitudinal commitment, and that “young people may need to be further supported to develop the skills and confidence necessary for leadership” (Brumby, Susan, Eversole, Robyn, & Watt, Leanne, 2007, p.35).

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Development interventions to engage youth and incorporate youth’s voices should create the conditions necessary for the young people to feel safe to bond among them and with facilitators. It is important to note that as youth started to feel more comfortable, they began to put forth their own viewpoints and share more personal and intimate experiences. Similarly, while we cannot state that the process contributed to increase their critical thinking, we observed

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some changes. Towards the end of the project the group started to verbalize thoughts such as the right to speak up as youth, and the importance of listening to youth’s demands. We believe that if

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implemented with a long term vision, engaging youth in participatory research and evaluation,

with specific emphasis in community strengthening, has the potential to raise awareness of issues

consciousness about youth’s marginalized conditions.

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that affect community youth's life such as public health challenges and to promote critical

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The participatory research and evaluation approach contributed to strengthening youths’

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capacities. In regard to research, by the end of the process they had built a more complex and nuanced understanding of research. Some of them expressed that they now view research as a

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tool for changing reality, for making their own concerns visible, for understanding issues in a

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deeper way, and for persuading other youth, or even their own parents, of issues that matter to them. Most of them highlighted the transformative potential of research and some started to

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propose research interests. Rural youth especially expressed their enthusiasm to keep

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investigating their history, their roots and their local stories. Implications for Practice

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Engaging youth in analysis is rarely attempted (Foster-Fishman, et al., 2010), however,

we find this crucial if we aim to motivate critical thinking that can potentially lead to community action. This study revealed some of the challenges inherent in this involving youth in the PRE process which will be addressed here, along with our lessons learned, in context for practitioners.

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One of the challenges we encountered was engaging youth in development interventions under conditions of disparities in knowledge, power, and status between actors (Tacchi & Lennie, 2014). We found differences between rural and urban youth especially in regard to resources and access. The project provided transportation services for those living in rural communities due to the limited availability of public transportation in order to facilitate their

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participation. Time constraints related to transportation to remote communities, however, limited broader participation from rural youth. These difficulties also affected the dynamics of what we

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called “the before and after,” the unstructured moments before the program activities started and after they ended. Those youth living in the city were able to socialize, connect and plan activities

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together outside the project day. These spaces outside of the program activities were not

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generally available to the rural youth who had to be transported back to their rural communities

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after the completion of the program day.

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The participants displayed subtle behaviors at certain moments that revealed their perceived differences of social status. For example, during the interviews those living in the city

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referred to those living in the rural communities in third person —creating a distance between

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them and rural youth. Likewise, during the evaluation process (in our visit to the rural school) some of the urban youth made references to the conditions of the school, the uniforms, and lack

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of resources. While these subtle behaviors showed youths’ perceptions of social status, spending

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time together and exchanging information allowed them to unite and focus on their similarities rather than their differences. By the end of the process the group talked about their common

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needs and the urge to create an advocacy group for youths in the area. Similarly, practitioners must acknowledge the technology divide that exists between rural

and urban youth, and plan accordingly. In this regard, while urban and rural youth living in the city had mobile phones and regular access to Internet in calling centers, youth from the communities did not. Those with mobile phones liked to communicate via text and were active

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users in the Facebook group, posting pictures and making comments throughout the process. Overall, urban youth in our program showed a greater sense of belonging to the Ñaños as they were participating actively in Facebook and in constant communication among themselves and the researchers. Rural youth were more isolated as they could not connect with the rest of the group every day after the end of the workshop. This created a challenge for us, as it took longer

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for them to bond with the group and to open up. As facilitators we must be mindful of the disparities that might exist and offer alternative ways to engage all participants.

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PRE showed that it is possible to actively involve youth as documenters and researchers during evaluation, and that their contributions can help addressing the existing power structures

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between participants, researchers and program designers. By opening spaces for youth to find

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themselves in roles that have been traditionally attributed to adults, by allowing them to

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substantially contribute and give feedback about interventions, by incorporating in the

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evaluations not just their insights but also a deeper analysis of their life circumstances and context, this methodology helps to establish a more just and horizontal relationship between all

Conclusions

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development actors, and helps to create the conditions for marginalized voices to be heard.

The findings suggest that by demystifying research and evaluation practices and

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rendering them accessible and relevant, marginalized youth can become increasingly critical and

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reflexive, as well as more aware of the reality in their communities. The participatory research and evaluation approach used during this intervention contributed to strengthen young people’s

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leadership capacities, as they became more self-confident and vocal. This approach also facilitated knowledge sharing among the group and the researcher, and provided grassroots knowledge promoting a reflective learning environment. Indirectly, this approach motivated youth to voice their wishes, expectations, and concerns, and helped them to feel motivated to inspire other youth in their region, and to propose solutions to local problems.

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Despite the numerous strengths that the approach demonstrated in the course of the present project, it is important to note that many inherent complexities of international development practice remain, including disparities of knowledge, power, and status between the different actors. Similarly, we concluded that demystifying research and evaluation could be beneficial for disenfranchised youth, to the extent that they see in research a powerful tool to

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better understand their realities and to develop local solutions to their problems. In order to have an impact and promote social change and community action, health interventions should aim to

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sustain social change rather than project goals over time. Additionally, this research supports

previous research suggesting that young people can be involved as main agents of development

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interventions as they can gather and provide substantive data about their region, their homes and

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communities, and explain cultural perceptions that can be key when developing health

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interventions. Information provided by the group can inform future development endeavors and health interventions. Involving research participants in future evaluations using methodologies

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interested in culturally relevant data such as “cultural beacons” (Dura, Felt, & Singhal, 2014), is

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Acknowledgements

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recommended.

We want to thank the Ñaños, for letting us discover their communities through their eyes, and for

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showing us the way toward finding myself as a researcher. To all the members of HLI, especially Darwin Guerrero, for being such a vast source of information, help and inspiration in the field.

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To Jessica Gonzalez Herrera for introducing us to the Ñaños and for all of her suggestions. A special thanks to Daniel Perera Bahamón for his valuable contributions and continuous support.

This research received a grant from Infectious and Tropical Disease Institute at Ohio University Heritage College of Osteopathic Medicine that covered project and researcher expenses in Loja 24

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Province, Ecuador. Funding was also provided by the Pontifical Catholic University of Ecuador (Grant # L13225).

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Conflict of Interest: No authors have conflicts of interest to declare.

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Biographies Sharon Casapulla is the Director of Research and Education for the Office of Rural and Underserved Programs and the Director of the Rural and Urban Scholars Pathways (RUSP) program at the Heritage College of Osteopathic Medicine at Ohio University. Her background is in education and educational research. She teaches classes on qualitative research methods and participates in collaborative research on health in rural communities in Ecuador. Her research interests include protective factors and resilience.

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Belén Marco is a visual researcher and practitioner specializing in Communication for Development (C4D) with focus on education and gender. She facilitates processes of critical reflection, consciousness rising and analysis using storytelling and design. Belén is particularly interested in developing communication strategies that place individuals and social groups at the core. She is currently enrolled in the Master's on Visual Communication at Ohio University, and has several years of experience working in community-based efforts. Currently she works in the Athens Photo Project, an art program that uses photography to foster mental health recovery and community integration in rural Appalachia.

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Juan Guillermo Gómez U. is a sociologist from Ecuador with an M.A. in International Relations, specialist in community based inquiries with focus in community health and education. He is currently pursuing his second Master's degree in Critical Studies in Educational Foundations at Ohio University. He has a special interest in designing and implementing critical, holistic and heterodox action-research, and has extended experience in horizontal and democratic work with grassroots communities. For several years, he has been the field coordinator of the Healthy Living Initiative, a community-based Chagas disease prevention effort lead by Ohio University's Infectious and Tropical Disease Institute and the Center for Research on Health in Latin America at Pontifical Catholic University of Ecuador.

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Mario J. Grijalva serves as Director of the Infectious and Tropical Disease Institute at the Heritage College of Osteopathic Medicine, Ohio University, and as Director of the Center for Research on Health in Latin America (CISeAL) at Pontifical Catholic University of Ecuador. He conducts multiple collaborative projects directly and indirectly related to infectious diseases that range from laboratory-based and field-based biomedical research to community-based research and community development projects.

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Claudia Nieto-Sanchez is a doctoral candidate in an Individual Interdisciplinary Program with concentration in Health Communication and Public Health at Ohio University. During the last six years, Claudia has served as General Coordinator of the Healthy Living Initiative, a community-based Chagas disease prevention effort lead by Ohio University's Tropical Disease Institute and the Center for Infectious and Chronic Disease Research at Catholic University of Ecuador. Her experience in communication for development and communication for social change includes the design and implementation of a national entertainment education strategy to promote sexual and reproductive rights in Colombia, and facilitation of the Ohio University Communication for Development (C4D) course for UNICEF from 2012 to 2016.

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YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO PROMOTE LEADERSHIP AND KNOWLEDGE SHARING

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Two members of the group interviewing one of the professors in the local school

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Picture 2 One member of the group facilitating an activity with children in the local school

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The group gathers together to work on the data analysis

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YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO PROMOTE LEADERSHIP AND KNOWLEDGE SHARING

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YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO PROMOTE LEADERSHIP AND KNOWLEDGE SHARING

Table 1. Components of the intervention

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Participatory mapping Sketching Interviews with teachers Interviews with children Photographic perceptions

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Introduce the purpose of data analysis Create a child-friendly report Link data, analysis and findings

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Transcription process Coding and categorizing information Reflecting and sharing everybody’s experiences Making sense of the data Writing and reporting findings Elaborating a child friendly report

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Participatory Data Analysis and Dissemination

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Goals Learn basic research, interviewing and facilitation skills Learn about research questions design and confidentiality Obtain basic video production skills Identify challenges and benefits of video to tell stories Encourage dialogue and teamwork Demystify research and evaluation Identify HLI activities implemented in the past Promote dialog and active listening among youth in relation to Chagas disease Break barriers among adults and youth Position youth as facilitators, researchers and evaluators Practice basic data collection

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Collective Research and Evaluation

Methods  Sketching  Mural collage Diagramming  Video storytelling

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Component Training in research, evaluation and participatory video

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YOUTH PARTICIPATORY RESEARCH AND EVALUATION TO PROMOTE LEADERSHIP AND KNOWLEDGE SHARING

Table 2. Lessons Learned: How to engage youth in development initiatives First week is critical to ensure the proper functioning of the process, not just in terms of setting expectations and motivations, but also to engage the group in planned activities. They need to feel that they belong to a group, that they can have fun and connect with other young people. The liability and functioning of a process of this nature highly depends on the attendance that receives and the bonding that generates. Allow for down time for all.

Flexibility and creativity at all stages of the process

The methodology of the intervention was flexible to adapt to how participants felt at every moment, letting the process evolve organically. We prepared short evaluation discussions at the end of each day that helped the group to make decisions at every step of the process and provided about what they wanted to do. Creative activities were crucial to generate rapport with the group. While we had a classroom to carry out the workshops, most of the activities were performed outdoors using participatory methods, equipment such as cameras and lots of different color post-it notes. Planning outdoor activities was particularly conducive to generating bonds within the group.

Different interests and roles

The Ñaños were able to choose the role that most suited them through the process. This created a safe space for them to experience different tasks and explore their preferred one.

Diversity

This was a diverse group with a varied range of ages, personalities, literacy levels and social skills. It was a challenge to get to know the particular interests/skills of each participant in order to best determine possible roles early on in the process. Researchers should aim to generate synergies that involve all oparticipants, especially those who were new to the group.

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First week is key

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